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Living with diabetes   Grant County News

Dreading that annual flu shot? Secretly grateful the vaccine wasn't available? While some people may have those feelings, others face a daily regimen of shots to control diabetes.

Caitlin Kaluhiokalani and Savannah Lunsford, 7-year-old students at Williamstown Elementary School, were diagnosed with Type I diabetes several years ago. Before heading to lunch at 10:30 a.m., both come to the school-based health center, pull out individual blood glucose meters, stick their finger, apply a drop of blood to the test strip, and wait for the results under the watchful eye of Julie Lewis, RN.

For Lewis, it's all in a day's work.

"I love these kids and I have to take care of them," said Lewis. "I call both mothers after they test to let them know what their numbers are. That way, they'll know how to deal with them when the girls get home from school."

Lewis had to bone up on the care and feeding of diabetic children when a student received an insulin pump last year.

"I went to Children's Hospital in Cincinnati to learn about pumps, nutrition and carbohydrate counting," said Lewis. "It was very scary at first until I learned, but now I'm more comfortable."

In addition to the two students at Williamstown Elementary, there is also a high school student with diabetes.

Teachers are also apprehensive when they have a diabetic child in their class, said Lewis.

"I teach them the symptoms of low blood sugar and once they get to know the child, they're OK," said Lewis. "I tell them, 'I'm here, call me if you need me.'"

Symptoms of low blood sugar include a pale complexion, shakiness, sleepiness or a general lethargy.

"The girls are so young, they don't know how to relate those feelings to having low blood sugar," said Lewis.

While Kaluhiokalani watches her carbohydrate intake and receives a shot before lunch, Lunsford receives a shot in the morning and one after school; both administered by her mother.

Lewis accompanies both girls to the cafeteria and chooses what they will eat for lunch.

"If they have a party or snacks in the classroom, I take a look at what they're having," said Lewis. "In Caitlin's case, I calculate the carbs and with Savannah, I'll check her blood sugar to see what she can have.

"It's hard telling a 7-year-old that she can't have a cupcake when everybody else is having one," said Lewis.

Those differences manifest themselves in a variety of ways.

"Sometimes, they make fun of me," said Savannah.

Taking things in stride, Tara Lunsford, Savannah's mom, plans to make it a learning opportunity.

"I'm going to have Savannah do a book report on diabetes so she can let the class know what it's like and why she does what she does," said Lunsford. "I hope that will help."

The mothers of both girls are grateful that Lewis is close at hand in case trouble should arise.

"I don't have to worry about anything with Nurse Julie there," said Maia Davis, Caitlin's mom. "Caitlin's been in trouble with low blood sugar before so it's a comfort."

"Without Nurse Julie, we'd be in terrible shape," said Tara Lunsford.

While the prospect of taking shots several times a day might be disconcerting for some, the girls take on a business-like demeanor at testing time.

Bubbly Kaluhiokalani, settles down, brushes the blonde hair from her eyes and begins the testing process. She assembles the necessary tools and squeezes her finger for a drop of blood while Lewis readies the insulin pen to administer a shot.

"It's OK. I know I have to do it," said Kaluhiokalani.

Lunsford views the process in a matter-of-fact way that belies her youth.

"Sometimes I don't like checking my blood sugar but I know it's what I have to do to live," said Lunsford.

School Gets $44 Million for Diabetes Study

ANN ARBOR, Mich. (Nov. 22) - The founder of an information technology company and his diabetic wife are giving $44 million to the University of Michigan for creation of a diabetes research center.

The donation, being announced Monday, comes from Bill Brehm of McLean, Va., a university graduate, and his wife, Dee.

Brehm, 75, founded SRA International, an information science company in Fairfax, Va. His wife, 74, has Type 1, or insulin-dependent, diabetes.

"We want to do something for the new diabetics, for these babies and infants just diagnosed," Dee Brehm said. "I don't want them to undergo the long-term regimen I've had."

The money will be used to build a research center and hire eight faculty members.

In September, real estate magnate Stephen M. Ross gave the university $100 million for its business school, which was renamed for him.

UF Researchers Use Adult Stem Cells to Produce Insulin

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_16708.html (*this news item will not be available after 04/21/2004)

Step Towards Type 1 Diabetes Cure

NEW YORK, June 3, 2003

Diabetes in School: Connecticut Mom Testifies for Students’ Rights

New York, NY, April 23, 2003—On April 2, Susan Craig, mother of Johnny, 14, who has juvenile (type 1) diabetes, testified in Hartford, Connecticut, before the joint House and Senate Education Committee in support of blood glucose testing in public schools in the state of Connecticut.  She was joined by three other Connecticut parents of children with diabetes, as well as House Representative J. Brendan Sharkey (D-CT), who himself has diabetes. 

In her testimony, Susan explained, “If our son is symptomatic at home, at a friend's house, in a movie theater, in a dugout or on a pitcher's mound, he checks his blood sugar and takes immediate corrective action if necessary.  But in 1998, this was forbidden in the Ridgefield public schools.” 

Just last year, an incident in Johnny’s seventh grade science class could have threatened his life.  His blood sugar had begun to drop rapidly, so he had to treat himself in the classroom.  “The teacher, who knew he had diabetes,” says Susan, “stopped the class and told Johnny in front of everyone to swallow what was in his mouth—a lifesaver.  He in fact was low and had to go to the bathroom to eat the rest of the roll of lifesavers to keep from crashing.”  Susan, along with the school nurse, was outraged.   

Although schools nationwide are required by federal law to make accommodations for students with diabetes, the specific details of those accommodations can vary from state to state, district to district, and in some cases, even school to school.  Rosemary Roberto, President of JDRF’s  Fairfield County Chapter, sees the discrepancy in her own area.  “In one local town, children are allowed to test and treat their blood sugars anywhere in the school,” she says.  “But in the adjoining town, they can only do it in the nurse’s office, and even have to keep their glucometers in the nurse’s office.”  To help address this problem, Rosemary brings together families having such problems, whenever possible, to advocate for their children’s rights in school.   

Susan, together with other Ridgefield parents, eventually won the battle with their own school district, but that was not enough; she is now working to help other parents advocate for their children in other parts of the state.  A member of JDRF’s Fairfield County Chapter, Susan is frequently referred to new families who find themselves struggling with school issues.

The group that testified on April 2 made a strong impact on the Committee; Susan brought Johnny’s glucometer with her and demonstrated a blood sugar check for the Committee.  “They were stunned at how little blood it took and how quick it was,” Susan said.  Rep. Sharkey was asked to draft language — establishing more specific guidelines for diabetes care in Connecticut schools — for a bill that is scheduled to come up for vote at the end of May. 

JDRF families in North Carolina, who were tackling similar issues, recently won an important victory when they testified in favor of a new state law improving care of students with diabetes in school, which passed last October.  It was only the fourth law of its kind in the nation.

JDRF recommends in its Position Statement that children with diabetes be allowed to test and treat blood sugar levels as necessary in the classroom or wherever they are in the school.  JDRF also recommends parents set up a 504 Plan — which helps outline the specifics of a child’s care at school — at the beginning of the school year or as soon as the child is diagnosed. 

In many cases, JDRF families report that schools and teachers are very cooperative, and that their children receive excellent care in school.  Thus it is difficult to predict for a newly diagnosed family, or for a family changing schools, what type of experience they will have.  Our volunteers often share their best tips and suggestions with one another to help make the best of the situation they are in.

While federal and state laws are critical to protecting the rights of children with diabetes, constant communication and collaboration with school personnel is also key.  If you are having difficulties with your child’s diabetes care in school, contact JDRF for a school information packet with resources and educational materials to share with school personnel.  Your local JDRF chapter may have additional resources.

School Districts Fight Diabetes Trend (audio)

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HEALTH & SCIENCE

Schools pushed to improve diabetics' care

Policies against food, sharps in class can jeopardize vulnerable young patients.

By Victoria Stagg Elliott, AMNews staff. May 20, 2002. Additional information

Shannon Oates, MD, an endocrinologist with Arnett Clinic in Lafayette, Ind., has met with school boards and written letters to teachers and principals in order to get permission for her patients with diabetes to test their blood sugar in the classroom. She has also fought for their right to have glucose tablets and food in their desk so they can deal with low blood sugar quickly.

"You've got to be a pit bull for your patients," said Dr. Oates. "My worst case was this kid who had to walk all the way across campus with low blood sugar -- about to pass out -- to get tested by the secretary.... That is not good enough."

Physicians are increasingly having to deal with how school policies affect diabetics because of the convergence of two trends: a shift in philosophy in how type 1 diabetes is cared for and an increase in the number of young people with type 2.

For those with type 1, treatment regimens have shifted to an emphasis on tight control. Many school-age patients now find themselves having to figure out ways to receive a dose of insulin midday. In addition, there is the challenge of having to check blood sugar more frequently.

"We're having to be more aggressive now because in the past insulin shots weren't traditionally given at lunch time," said Andy Muir, MD, associate professor in pediatric endocrinology at the University of Florida in Gainesville. "With the push towards intensive control, there's a lot of people who want to give insulin and check blood sugars and really do intensive treatment for the five or six hours a day they're at school." Dr. Muir presented a workshop on the issue at the May annual meeting of the American Association of Clinical Endocrinologists in Chicago.

In addition, type 2 diabetes was unheard of in the school setting until a few years ago. Now, though, its incidence is escalating significantly in connection with the obesity epidemic.

As obesity among kids increases, so does type 2 diabetes.

"Type 2's may not be on insulin, but they'll probably still have to be testing," said Leann Olansky, MD, a professor of medicine in endocrinology at the University of Oklahoma School of Medicine in Oklahoma City.

Many schools ban food in the classroom. Lancets used for glucose monitoring are sometimes classified as weapons because of fears that they may be used to cut someone or transmit bloodborne disease.

Physicians say these kinds of policies impair their patients' ability to deal quickly with low blood sugar or monitor their status in the classroom without a trip to the school nurse or other designated adult.

"Kids bleed at school all the time. A kid testing their blood sugar should not be a big deal," said Dr. Olansky. "We need to step up our ability to treat in schools."

AACE has not taken an official position on these issues, but many of those at the annual meeting feel that it may be time for schools to become more flexible with their policies.

"The child with diabetes misses part of class, lunch or physical education on a daily basis," said Dr. Muir. "The goal is to make diabetes care as easy as possible so the patients can carry out this invasive treatment without turning their lives upside down."

Physicians are concerned about schools offering more soda and snacks and less physical activity.

Physicians concede that, in line with teachers' fears, some of their patients will use their disease to get out of class or take other privileges. But, for the most part, the policies are an onerous burden. Doctors are concerned about the distance between the classroom and the nurse's office -- particularly if a student has low blood sugar. Most adolescents also avoid asking to be allowed to see the school nurse because they don't want to bring attention to their disease.

"The children don't want to be singled out, and it's inappropriate care," said Dr. Oates.

There are signs of change. The National Assn. of School Nurses adopted a policy last year advocating easy access to blood sugar monitoring, and an increasing number of school districts are allowing it. But physicians say many schools and teachers are still skittish and instead prefer to send kids down the hall. "Some schools and some teachers are just incredibly insensitive to the needs of kids with diabetes," said Dr. Olansky.

But while many doctors are looking to improve treatment during the school day, some also want schools to play a larger role in preventing type 2, which they believe is fueled in part by the growing availability of sodas and unhealthy snacks on campuses and a decline in physical activity.

"School PE programs are disappearing," said Dr. Muir. "Kids are being targeted by marketing pressure, and they're suffering health consequences because of it."

Diabetes in School: Lessons We Can All Learn From New York, NY, May 1, 2002 — Children with type 1 diabetes must be able to properly manage their diabetes at school. They also need a strong support network within the school to assist them with day-to-day care as well as in emergency situations. Several federal laws have been established to ensure such rights be given to children with diabetes. Unfortunately, however, there are countless cases each year in which parents and students encounter conflict with school personnel over issues of diabetes care in school. The most recent such story reported to JDRF involved a Florida eighth-grader whose insulin pump was confiscated at school. As reported in the South Florida Sun-Sentinel on April 24, the school district carried out an investigation of the incident and decided not to reprimand the assistant principal in question. In response to the Florida incident, an op-ed article written by two volunteers with the Greater Palm Beach County Chapter of JDRF, Claire and Peter Petrosky, was published in the Sun-Sentinel on April 29. “The dispute...underscores how important it is for us, the parents, to better educate our educators about our children who have chronic illnesses,” the Petroskys write. “It also calls for parents and school officials to work closely together to eliminate the possibility of future conflicts.” “Guidelines for schools are available through local chapters of the Juvenile Diabetes Research Foundation,” they continue. “Making sure all necessary personnel are informed about a student’s condition, watching a student’s behavior before meals and snacks, making sure meals are eaten on schedule, not assigning exercise just before a meal when a student may be in needs of food, and keeping a source of sugar readily available are just a few tips JDRF offers to schools.”

The Federal Aviation Administration (FAA) has implemented stepped-up
security measures at the nation's airports in response to last month's
tragic events. Some of the new security measures may affect airline
passengers with diabetes. The American Diabetes Association recognizes the added inconvenience this may pose for individuals with diabetes, but understands the necessity to secure airline passenger safety.

Below please find a list of the most current information that the
Association has received regarding people with diabetes who need to fly with their supplies and equipment within the 50 United States. We received this in formation verbally from a representative of the Federal Aviation Administration's Aviation, Security Policy & Planning Division (Washington, D.C. headquarters). We have been told that the FAA will be issuing the security measures to air carriers within a few days in the form of a "security directive."

1. Passengers may board with syringes or insulin delivery systems only if they can produce a vial of insulin with a professional, pharmaceutical pre- printed label which clearly identifies the medication. No exceptions will be made.

Since the prescription label is on the outside of the box containing the
vial of insulin, the FAA recommends that passengers refrain from discarding their insulin box and come prepared with their vial of insulin in its original pharmaceutically labeled box

2. For passengers who have diabetes and must test their blood glucose
levels but who do not require insulin, boarding with their lancets is
acceptable as long as the lancets are capped, and as long as the lancets are brought on with the glucose meter that has the manufacturer's name embossed on the meter (i.e. One Touch meters say "One Touch," Accucheck meters say "Accucheck").

3. Glucagon is dispensed and normally kept in a pre-printed labeled plastic container or box. We advise those people with diabetes who are traveling to keep their glucagon kit intact in its original pre-printed pharmaceutically labeled container.

4. Contrary to what we were told previously, because of forgery concerns, prescriptions and letters of medical necessity will not be accepted. 

5. FAA security measures apply to travel within the 50 United States only. Passengers should consult their individual air carrier for both domestic (US) and international travel regulations. Be advised that the FAA's policy and the policy of each airline is subject to change.

The above list of measures is a minimum requirement only and air carriers may have other requirements that may impact a passenger's ability to board with diabetes equipment and supplies.

Accordingly, the FAA and the Association strongly urge each passenger to call the airline carrier at least one day in advance of his or her scheduled flight to confirm what that airline's policy is with regard to diabetes medication and supplies. Be advised that each airline's policy is subject to change.

The Association has received a small number of complaints from passengers who have encountered difficulty when trying to pass through airport security with syringes and lancets. Should a passenger be denied boarding a flight or be faced with any other unforeseen diabetes related difficulty because of security measures, he or she should ask to speak to the security screener's supervisor or contact the FAA grounds security commissioner at the departing airport.

In addition, please contact the American Diabetes Association at
703-549-1500 x-2108 so that we may be kept informed of airline protocols and security measures. The Civil Aviation Security division of the FAA may also be contacted at 202-267-9863.

The Association will continue to monitor this situation and keep you
informed of new developments.


Heidi Williams ~ Program Director
Serving Washington & Northern Idaho
Ph: 206/282-4616 / 1-888-DIABETES ext. 7203
FAX: 206/282-4729 

E-mail: hewilliams@diabetes.org
Visit us on the Web! www.diabetes.org

Seattle Schools End Segregation Attempt Against Children with Diabetes; Schools Agrees to Pay Damages to Parents 


 March 12, 2001 
SEATTLE (BUSINESS WIRE) - The Seattle School District recently abandoned their attempts to segregate two children with diabetes by moving them to different schools.
Bowing to strong pressure from their parents, the district will now allow the children to stay in their schools, as well as pay the parents damages and legal fees.

The five-and six-year-old children are diagnosed with Type I diabetes and currently attend Sanislo and Thurgood Marshal Elementary schools. The children will now stay in those schools, preventing a move based on a disease that strikes 1.7 out of every 1000 Americans under 20 years of age.

"These and other children now have a better chance of living a life without being stigmatized as disabled individuals," said Tony Shapiro, the attorney from Hagens Berman representing the families, and the father of an 11-year-old child with diabetes himself.

Shapiro added, "it's unfortunate and painful that the school district needlessly took four months to understand what hundreds of other school districts already have. Their tactics inflicted undue trauma on both the children and their parents,"

In September of last year, the district ordered that the children must move to a school with a full-time nurse on duty because of their need to periodically check their blood-sugar levels. Regional and national experts both agreed that a full-time nurse was not necessary for these children, including representatives from the American Diabetes Association.

The school district offered little reasoning for the children's move, according to Shapiro. "The only motive given was a change in the school's policy for handling children with diabetes. But, in fact, several other young children with diabetes are enrolled in Seattle schools without full-time nurses."

Parents Abby Wolk and Michelle Smith both prepared comprehensive care plans for their children, discussed their children's need for self-administered glucose tests with teachers, and made sure the proper supplies were available to the teachers. Both children are also experienced in giving themselves simple finger-prick blood tests to measure their blood sugar levels, a standard procedure to monitor children with diabetes. Several non-medical personnel have supervised these children in other situations.

Several cases around the country have addressed the issue of non-medical personnel caring for children with diabetes. National daycare chains KinderCare and LaPetite Academy reached a settlement with the Department of Justice and The Association that allows staff members to supervise finger-prick blood tests. In Virginia, parents lodged complaints with the Federal Office of Civil Rights of the Department of Education (OCR) after school officials refused to allow personnel to administer life-saving glucagons injections in an emergency situation. A civil rights agreement reached between the OCR and the school district requiring public schools to train personnel in administering both insulin and glucagons shots.

Nationally, it is estimated that more than 100,000 children under the age of 18 have diabetes. Diabetes is a non-contagious disease in which the body does not produce or properly use insulin, a hormone needed to convert sugar, starches and other foods needed for daily life.

ED NOTE: Abby Wolk, a parent of one of children named in the suit, will be available for interviews, as well as the attorney in the case. To arrange, contact Jeremy Mackie at 206/443-9357.

School staffs are trained to give shots to diabetics

February 11, 2001

The Seminole County School District has trained about100 employees to give lifesaving shots to diabetic students who lose consciousness -- a move pushed by parents and the American Diabetes Association but initially opposed by school officials.

"Everyone is really happy that they’ve taken the first step," said Patty Barone, whose daughter, a kindergarten student, has diabetes. "It’s positive that they’re at least making the effort."

Parents and the diabetes association pushed for the training because they feared the district’s plan -- calling 911 -- would delay the administration of lifesaving glucagon shots should a diabetic student lose consciousness.

The district has more than 90 diabetic students enrolled and has never had a case where a diabetic student needed a shot, which can quickly end a dangerous low-blood sugar episode. Seminole officials had said their policy -- the same as those in other Florida school districts, including, Orange -- did not put students in danger.

The district’s initial resistance to the training prompted Barone and a few other parents to file complaints to the federal Education Department’s Office of Civil Rights. A similar case filed two years ago against a Virginia school district ended with that district agreeing to train its staff to give the shots.

Then at a September meeting of the Seminole County School Board, some 20 parents of diabetic students pleaded for a change in policy. They said diabetic emergencies are rare, but they’d feel safer knowing someone on their children’s campuses was trained to give glucagon shots.

District officials later decided to see if school employees would be willing to give the shots, said Sandra Pomerantz, a school district staff attorney.

Quite a few employees agreed, and the diabetes association then arranged training sessions. All county schools but one -- and no diabetic student attends that school -- now have at least one person trained. And almost all those schools have more than one employee trained, Pomerantz said.

One of the complaints filed with the office -- one that dealt with glucagon but also broader issues about diabetic students’ treatment -- is pending. Attorneys from the school district and the civil rights office tentatively are scheduled to meet in Seminole this week to try to resolve those issues.

Diabetes is caused by the body not producing or properly using the hormone insulin, which helps convert food into energy. Children with diabetes can suffer from hypoglycemia, or low blood-sugar levels.

Severe cases of hypoglycemia, which are rare, can lead to unconsciousness, then seizures, heart failure and death.

Leslie Postal can be reached at lpostal@orlandosentinel.com or 407-772-8046.

Parents of diabetics file complaint
By Leslie Postal
of the Sentinel Staff

Published in The Orlando Sentinel on September 26, 2000

Like many Florida school districts, Seminole County doesn`t have many school nurses. So if a diabetic student were to lose consciousness, the first and only option often would be to call 911.

The American Diabetes Association and some local parents say a better option would be to train school staff members to give lifesaving shots of glucagon. Waiting for paramedics, they say, would only delay the administration of a substance that can quickly end a dangerous diabetic episode.

The district has refused, however, so several parents have filed complaints with the U.S. Department of Education`s Office of Civil Rights. Last year, a similar case filed against a Virginia school district ended with that district agreeing to train its staff, as the diabetes association wanted.

The association and some parents of the district`s 94 diabetic students plan to plead their case at tonight`s Seminole County School Board meeting.

"We`re looking for children with diabetes in that school system to be safe, and with the policy they have now, they`re not," said Delia Jervier, district manager of the association`s Central Florida branch.

School officials say that`s not true.

No Seminole school is more than two miles from a fire-rescue station, so calling 911 would be the best way to get students prompt, professional attention, said Ned Julian, the School Board`s attorney.

Staff members with no medical training would be "terrified" at the prospect of giving an injection to an unconscious student, he said.

And the district does place nurses in some schools, if it believes a particular child needs that kind of medical supervision.

"We feel very confident in what we`re doing," Julian said. "We`re not going to put a child at risk."

The Office of Civil Rights wants Seminole to reach an agreement like the one the agency made last year with the Loudon County, Va. school district.

So far, Seminole is resisting.

Seminole is a test case in Florida, Julian said, and "the outcome will probably affect everybody."

Diabetes is a disease in which the body doesn`t produce or properly use the hormone insulin, which helps convert food into energy. Children with diabetes can suffer from hypoglycemia, or low blood-sugar levels. Severe cases of hypoglycemia are rare, but they can lead to unconsciousness and* then seizures, heart failure and death.

There has never been a case of a student requiring a glucagon shot on campus, Julian said.

Orange County has a similar policy and also has not had a case of a student needing a glucagon shot, said Jim Halscott, the director of exceptional education and health services.

Patty Barone, a parent who filed a federal complaint, knows it`s unlikely her child will lose consciousness at school. But she wants the best treatment for her if it does happen.

"I`m not going to have my 5-year-old to be the first one lying there, and no one`s going to help her," she said.

At her insistence, there is a nurse at her daughter`s school. But Barone said she has no guarantees there will be one there as her daughter, now in kindergarten, moves into higher grades.

Another family that filed a complaint was denied a request for a nurse at their child`s high school.

Feb. 15, 2000

Disputed duties: Teaching the disabled
By Linda Temple, Special for USA TODAY

Nurse shortage part of the problem if diabetic Devin Jackson slips into a coma at school, it will likely be her fourth-grade teacher, not a trained nurse or hastily summoned paramedic, who administers the injection that saves her life.

More than 500 staff members and every bus driver in the 28,000-student Loudoun County, Va., district recently learned to administer glucose injections after the girl's family won that right through the U.S. Department of Education's Office for Civil Rights (OCR).

That case and an estimated 2,500 others each year - half of the complaints filed with the OCR - stem from disputes over the rights of the 5.8 million children with disabilities in U.S. public schools.

Their numbers have risen 20% in the past decade, to nearly 11% of the 52.7 million students in kindergarten through 12th grade, according to the U.S. Department of Education.

"As medical innovations have increased, more kids are surviving, and special needs have increased," says Julie Underwood, general counsel to the National School Boards Association. "Schools are on the front line to meet their needs."

Ned Waterhouse, head of pupil services in the Loudoun County district, says schools are feeling the full effects of the 1977 Individuals With Disabilities Education Act (IDEA), which entitles children with disabilities to a free public education, and Section 504 of the Vocational Rehabilitation Act of 1973, which prohibits discrimination against the disabled in any federally funded program.

"These laws are bringing about a true paradigm shift in terms of the weight people can bring to the issue of individual rights."

Section 504, which covers conditions ranging from attention deficit disorder to AIDS, is being invoked with increasing frequency by parents seeking accommodations - which can mean hands-on help from teachers - for their children.

Teachers can find themselves responsible not just for feeding and for toilet trips, but for performing urinary catheterizations and for suctioning tracheotomy tubes.

"Teachers are feeling great anxiety," says Dennis Friel of the National Education Association. The NEA and the American Federation of Teachers, the two largest teachers unions, strongly oppose teachers tending to student health needs.

"They're fearful they will hurt a child by doing something incorrectly or be held personally liable," Friel says. "They feel they are being asked to do things they didn't think would be part of their career selection."

Jeff Hitchcock, an Ohio parent activist who runs a Web site for families with diabetic kids (www.childrenwithdiabetes.com), sympathizes with teachers, "but only to a point. My daughter has diabetes 24 hours a day, and her care needs do not end when she steps into the classroom."

"Parents say it's all in a day's work," says teacher Patty Ralabate of Danbury, Conn., "but it's different when you're dealing with a class of 25 kids. It's scary."

Ralabate says she once refused to feed a student through a stomach tube "because I didn't feel it was a good use of my time as a speech and language pathologist." She says a fellow teacher was threatened with firing when she wouldn't change a male sixth-grader's diaper.

"This is a very hot issue. It's wonderful that more disabled kids are in the classroom, but when they need care to maintain their health and, in some cases, their lives, teachers shouldn't be the ones doing it."

Education Secretary Richard Riley told a January teaching conference that among those working directly with children with disabilities, 21% said they felt "well-prepared to address the needs of students with disabilities" in a 1998 Education Department survey.

"Teachers try their best, trying to accommodate their kids," says Annie Hawkins, professor of teacher education at the University of Cincinnati. "But that has a different meaning now than it did 25 years ago. It takes training to know how to empty a colostomy bag or clear the lungs of a student with cystic fibrosis."

Elliott Marx of Designs for Change, a Chicago non-profit group that advises families with disabled children, says medically fragile kids needing such services "are a tiny, tiny fraction." Most teachers, he says, welcome the training to care for their students, "but some won't even talk about it. They think taking on a special-needs kid is going to throw their whole building into chaos, but it's been shown that better students and better people result when children learn to accept differences and limitations."

No one questions that children with disabilities benefit from being in regular classrooms, says Pat Silva, director of special education in the John Swett School District near San Francisco, which bans teachers from health-related tasks and hires nurses and aides to tend to kids with disabilities. "It's hard, because their needs are costing more and more when there is less money to serve them."

Crystal Jackson says it wasn't funding but "priorities and politics" that stymied the process in her daughter's case. "The staff was more than willing to do the injections. They were as frustrated as we were that the district had to be forced into it."

Howard Kallem, chief attorney for the Washington, D.C., region of the OCR, says the burden on schools and teachers is not as onerous as it is often made out to be, citing the Jackson case as an example.

"That injection is like giving a pinprick. There just isn't a big level of risk. In most cases, compliance with the law is a matter of doing what other districts have done, managing the situation with proper training."

But Jackie Golden of the National Parent Network on Disabilities says schools need help. "There is no set of best practices" to guide schools in meeting the needs of children with disabilities, she says. "The laws and their interpretations vary from state to state, and they're changing all the time. I wish I could say there is one place that could serve as a model, but it doesn't exist."

NEWS RELEASE

Civil Rights Agreement Reached In Loudoun County, Virginia; School Children with Diabetes Nationwide May Benefit

(Leesburg, VA) - School children with diabetes all over the country may benefit from a recent agreement settling discrimination complaints lodged by Loudoun County parents who feared their children’s health was in danger. The agreement, forged by the federal Office of Civil Rights of the Department of Education (OCR) and Loudoun County Public Schools, came in response to a long-fought battle waged by several Loudoun County parents in conjunction with the American Diabetes Association (ADA).

Parents Crystal Jackson and Sandi Pope, on behalf of their three elementary school-aged children, lodged complaints with OCR after Loudoun County school officials refused to allow school personnel to administer life-saving glucagon injections to students suffering from severe insulin reactions. The officials said only registered nurses could administer the shots, but nurses were not available at all Loudoun County schools. The school district adopted a policy that called for dialing "911" rather than have non-medical personnel administer glucagon. Parents complained their children could die or suffer brain damage in the seven to ten minutes in might take for emergency personnel to arrive.

Putting the glucagon issue into perspective, Ms. Pope points out that she, and other parents of children with diabetes in the Loudoun County schools, "were being asked to send our children to school with the knowledge that if they needed life-saving medication, no one at the school would provide it."

Ms. Jackson and Ms. Pope alleged that refusal to provide this service, and other services necessary for children with diabetes to receive a "free appropriate public education," constituted discrimination in violation of Section 504 of the Rehabilitation Act of 1973. This law prohibits discrimination on the basis of disability in programs and activities that receive federal financial assistance. OCR agreed to take on this important issue and the office’s investigation ended with the signing of a Commitment to Resolve dated October 25, 1999.

"We are hopeful that the resolution of our discrimination problems will help others whose schools refuse to provide these accommodations," Ms. Jackson said. "Schools must be willing to administer glucagon and insulin, must be willing to allow a child to have a snack, must be willing to do blood sugar testing, permit extra absences for doctors’ appointments and illness, and give the child an opportunity to make up missed work and tests."

Ms. Jackson and Ms. Pope won an earlier victory this year when they, and the ADA, successfully pushed for a new law forcing Virginia public schools to train personnel to administer both insulin and glucagon shots. This law, introduced by state Sen. William Mims, provides important protection for children in public schools throughout Virginia. The OCR agreement, however, goes further than the new law by specifying that the school district must provide trained school personnel to accompany children with diabetes on field trips, during extra-curricular activities, and on the bus; provide basic training in diabetes care for all school staff who have immediate custodial care of children with diabetes at school; and develop and implement a Health Care Plan for each student with diabetes setting out the reasonable accommodations needed for that specific child.

"The American Diabetes Association is extremely pleased with the OCR agreement and hopes it will serve as a model to help children in schools all over America," said Dr. Ann Albright, Chair of the ADA’s Advocacy Committee. "We constantly receive calls from parents whose school systems discriminate against children with diabetes. We believe this agreement will help us in our fight to put an end to this discrimination and protect the health of children with diabetes in schools and day care centers."

While the Loudoun County school district has learned a lot about diabetes during the course of resolving these complaints, the families have been taught many lessons as well. "This experience has certainly provided our children with a sense of empowerment and has also taught them to stand firm in their beliefs," Ms. Jackson noted. Ms. Pope reflected, "Fourteen months ago, at the very tender ages of 8 and 9, my children learned what it felt like to be discriminated against at the hand of their school system. We learned how to spell discrimination, we learned the meaning of it, and most importantly, we learned how to fight it and win."

Diabetes is an incurable disease that affects the body’s ability to produce or respond properly to insulin, a hormone that allows blood sugar to enter the cells of the body and be used for energy. People with Type 1 diabetes -- which make up the vast majority of students with diabetes -- as well as some people with Type 2 diabetes, must receive insulin every day either through injections or an insulin pump. However, use of insulin can cause too much sugar to cross the cell membranes. This results in abnormally low blood sugar levels or "hypoglycemia," which can cause loss of consciousness, seizure and the inability to treat oneself with oral glucose. Glucagon shots are required when individuals with insulin-dependent diabetes experience severe hypoglycemia.

Diabetes affects approximately 16 million people nationwide. It is the country’s sixth deadliest disease and can lead to heart disease, stroke, kidney failure, blindness and amputations.
-American Diabetes Association-

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